Apraxia Momma Bear Bloghttps://apraxiamommabear.com
Mon, 19 Nov 2018 23:53:18 +0000en-gbReal Life &amp; Self Care: I Have Lost Mehttps://apraxiamommabear.com/blog/item/15-real-life-self-care-i-lost-me
https://apraxiamommabear.com/blog/item/15-real-life-self-care-i-lost-meLately, it feels as if the world is closing in around me. Things seem to be coming in all directions and every time I come…

I try to see the silver lining in things, maybe that’s my distraction from the reality at hand? Maybe that’s my inner Earth Momma that craves peace and harmony, I doubt I’ll ever know. I do know that I overload “my plate” to the point of breaking and struggle day in and day out to achieve the things I need to. I give to the point of having nothing left and yet I can’t imagine not. Whenever someone says I have too much going on in my life and I need to simplify I immediately ask, “tell me how to do it?” How do you pick and choose? Personally, I have always believed that when someone says, “I don’t have time to do that” or “I forgot” is simply a polite way of saying, “it wasn’t important.”

I tirelessly try to do for others as I would hope they would do for me or pass along later to others. I am not perfect, I never will be and I will never aim to be. I do strive to be better than I was the day before. I thoroughly enjoy self-reflection and growth, oddly, I crave it. I have to feel as if I am in motion, not just existing, perhaps that is why I give too much of myself.

Due to my overwhelming sense of feeling like I am losing myself little by little, I have begun calling 2018 my year of cleansing. If it is not good for me, if it does not feel good, if it is not refilling my emotional cup, it must go or they must go. I have to breath; peacefully not anxiously. I need to sleep; comfortably not restlessly. I woke up the other morning and felt this overpowering connection to “The Giving Tree” by Shel Silverstein. One part in particular stood out

“And after a long time the boy came back again.

"I am sorry, Boy, "said the tree, "but I have nothing left to give you — My apples are gone."

"My teeth are too weak for apple, "said the boy.

"My branches are gone," said the tree. "You cannot swing on them "

"I am too old to swing on branches" said the boy.

"My trunk is gone," said the tree. "You cannot climb"

"I am too tired to climb," said the boy.

"I am sorry" sighed the tree. "I wish that I could give you something. . . but I have nothing left.

I am just an old stump. I am sorry..."

The tree in the story feels so symbolic to my life, I can’t shake it. The evening before this connection I was exhausted, feeling as if I had given to the point of breaking; completely absent from my own life and emotional needs. I was then told that I have a “polarizing personality” and that “people either love me or hate me.” It was said in a malicious way with the intent to hurt, mission accomplished? I know, I am not always an easy person but I am a good person. Yes, I have a strong personality but I believe it is that characteristic that has allowed me to push through. Regardless, that statement has caused me to reevaluate, step back, and reflect. It was soul crushing, however it is also I reminder that I need to take care of myself. I need to give to myself as I give to others, I am worthy of at least that. Until I do that for me I will be left sitting here, struggling to breath and anxiously working through my life only wanting, hoping that someone sees the real, me. Maybe, this is all part of my 2018 cleansing……(there’s that silver lining). The lesson, take care of yourself. If you don’t, there are no guarantees that someone else will.

And remember; beautiful, strong, amazing things can grow out of the most unsuspecting places

Last year in San Diego, my dear friend; fellow walk coordinator, blogger, SLP and Mommy to a child with apraxia (no, I am not making that up – she does all of that) Laura Smith and I were told by Sharon Gretz, the Founder of CASANA that “the torch had been passed to us.” I do not believe either of us knew the gravity of that statement, such an honor and yet THE biggest shoes to fill! Those words hung in my head on repeat, I tried to speak with as many people as I could, meet them for a drink, hug them when they cried, listen to their story and welcome them with open arms into our Apraxia Kids family. I wore a bracelet that she gifted me; it is engraved with, “nevertheless, she persisted.” Every time I felt unsure, I would look at it for strength and think “what would Sharon do?” I did my best to hug each family and reassure them that things will be okay. I feel it is my duty, no my privilege, it is what was done for me (still is some days) the very least I can give back is that reassurance.

Laura Smith and I

San Diego, California 2017

Bloggers, Speakers & Walk Coordinators

The Apraxia Kids family is interesting group to say the least. We come from all walks of life, all over the country, and have children of all ages but we are all working towards one common goal, making the lives of the children and families living with apraxia easier. It may sound cliché but it is the absolute truth, we are bonded by our commitment to the mission of raising awareness and supporting each other. Truth be told many of the volunteers could walk away due to the progress our children have made. But we don’t; we persevere with unwavering support for an organization that reminded us to breath and held our hand as we walked this journey. When we started on this road we gained things that no one else could provide – someone that understood, parents walking that same scary road with a destination that is unknown, we gained our tribe.

The bonds you form at the conference and through the support group on Facebook can be your saving grace on those particularly hard days, reach out. We see you, we feel you, you are not alone on this journey. This is part of what apraxia has woven through every facet of my life. It is not just a condition filled with appointments, setbacks and frustration, it is a family. One that I am forever grateful for and cannot fathom a day without.

The volunteers, the board, the staff fight endlessly and some days it can be exhausting. But, when I am asked why do I keep fighting? I always say, I never want someone to feel how I felt when we were first diagnosed. I am certain that everyone involved would respond the same. Just know that we are here, you are not alone, we are your apraxia tribe.

]]>abseve@bellsouth.net (Apraxia Momma Bear)Apraxia Momma Bear BlogWed, 18 Jul 2018 20:00:56 +0000Our Journey with Apraxia: What I Have Learnedhttps://apraxiamommabear.com/blog/item/13-our-journey-with-apraxia-what-i-have-learned
https://apraxiamommabear.com/blog/item/13-our-journey-with-apraxia-what-i-have-learned People often ask me to describe what I’ve learned as the parent of a child with apraxia. It isn’t always easy to put into…

1. There will be setbacks. Your child will “lose” words … words that you worked on for months, if not years, to gain. It is unbelievably defeating. However, please know that it is okay. Those words will come back. It may take a little while, but they will. Also, as they develop language, many children will go through dysfluency, which sounds similar to stuttering. It is incredibly frustrating for the child and heartbreaking for the parent. This was the source of my dawning comprehension that things wouldn’t always move in an upward direction.

2. Patience is important. As frustrated as you may become with your child’s progress, therapists, the school system, and your family, try to remember to have patience. Your child needs you to be patient and determined. It can be very difficult, but I have found it to be absolutely necessary. Patience will give you clarity and the ability to address each situation in such a way that you will hopefully have a more positive outcome.

3. Don’t get stuck on a therapist. It would be a perfect world if the very first therapist you went to was amazing, determined, connected with your child, and you adored him or her. However, if apraxia teaches you nothing else, it will show you that the world is not perfect. Therapists aren’t there to be your or your child’s friends. They are there to help your child speak. Do not lose sight of that. Progress is critical. If you are not seeing or hearing it in a reasonable amount of time (e.g., several months), move on.

4. Endurance is also critical. This isn’t a sprint; it is a marathon. Apraxia, unfortunately, isn’t going anywhere. It is here for the long haul. Your child’s needs and progress will develop and change, but apraxia is always looming. For us, it rears its head when our son is sick or hurt and he can no longer tell us what is wrong. You will be reminded how difficult it was for your child to master those first words when you watch him or her struggle with reading, writing, or math as his or her peers sail by. Just as your child fought for the words, he or she will fight for these skills as well. Help your child fight and set the pace for the marathon ahead.

5. Longevity is to be expected. I wish I had started explaining apraxia better to others early on, but back then I did not fully understand the world into which we were entering. I would love it if people in my son’s day-to-day life grasped the fight ahead. Your child will most likely always need support for apraxia, and hopefully he or she won’t always have to fight for it. Others need to understand that it’s a lifelong diagnosis, not an easy fix.

6. Speech is not a cure. Now that my son speaks, most people believe apraxia is a non-issue. They are blind to how many hundreds, if not thousands, of hours he has spent in therapy—how many hours he still spends in therapy, something that won’t be changing for the foreseeable future. If anything, we will only be adding new types of therapists to help with academic challenges. Speech does not “fix” our children, and their apraxia needs don’t end with its emergence.

7. Your support system may not be who you imagined. I think it is natural to believe that your family will be just as invested in your child’s progress as you are. We may tell ourselves that our friends’ hearts are breaking with ours as we digest this new part of our life. Well, sometimes they aren’t … at least not for the vast number of parents that I hear from. I do know some people who have great support close to home, but for the majority of us that is just not the case.

Most of us will have people that appear out of nowhere to offer support. They may be acquaintances, people you reconnect with from your past because they can relate, members of an online support group (which I highly recommend joining), or parents of your child’s friends. Whoever they are, those individuals seem to always be celebrating your child’s successes and feeling your pain on those not-so-great days. Hold on to those people. Tell them how much you and your child appreciate them. They are critical pieces of the puzzle that is your child’s life—and yours, too.

8. Your child’s therapists will become like family. Your child’s therapists, specialists, tutors, and anyone else he or she ends up needing may become closer to you then some of your family and friends. Our son will be 6 years old in a couple of weeks. He is having his first real birthday party with friends. The very first person he asked to invite: Mrs. Rachel. She was one of his first speech-language pathologists, and they worked together for years. They have a bond like nothing I have ever experienced. He adores her, and she adores him right back. I think he knows how important she was for him on this journey. Their connection is strong and genuine. He loves and is close with his two occupational therapists as well, but there is just something about the wonderful Mrs. Rachel. Don’t be surprised by the strong and enduring relationships your child develops with some of the people with whom he or she works.

9. Celebrate the successes more than you grieve the setbacks. It is human nature to think about what is going wrong or what you feel has been taken away. However, try not to dwell on these things too often or for too long. It is a vicious cycle. We all have low times, and that’s okay. The grief will ebb and flow, and that’s normal. Instead, try to focus on the progress, the relationships your child has formed. Reflect on how your journey began and on what you have accomplished since then.

I have videos of my son that I can watch, and they serve as an instant reminder of what the beginning of his journey looked and felt like. I also keep a three-ring binder with every evaluation and IEP in date order. I find it soothing to be able to go back and read all of his evaluations and compare them to today. It reminds me that we are headed in the right direction. It might not always be as quickly as I would like, but we are still making progress and achieving goals.

10. Every child deserves a voice. Recently I was reminded about everything I have mentioned above all in one simple act. Pretty incredible, right? I woke up to find that my son had randomly pulled my CASANA (Childhood Apraxia of Speech Association of North America, www.apraxia-kids.org) magnet off of the refrigerator. He had traced it and wrote, to the best of his ability, “Every Child Deserves a Voice.” I asked him if he knew what that said or what it meant. He said no. I explained that we bought that magnet at the apraxia conference in Texas, and I read it to him. His response: “But Momma, every child DOES deserve a voice.” Of course I was teary-eyed and took to Facebook to share my joy. I received several messages to tell him “Good work!” and “I am proud of you!” There were also messages to me saying that I am a good mom and to keep fighting. As silly as all that may seem to some people, it was everything to me. Those friends “showed up” and supported my child; they supported me. These simple messages reminded me of the marathon we are undertaking and gave me the extra strength that I desperately needed. Your child DOES deserve a voice, and you will help him or her find it as best as you can and by any means possible.

Despite knowing all of these things, I have still been feeling anxious and overwhelmed by my son’s impending transition to first grade. He is scared … terrified really. He says they have tests, new teachers, not as much recess, and he won’t have anyone to help him because his friends might not be there. Parents of “typical” children get to say all of the “normal” things to comfort their children, and that is usually the end of the conversation. For parents of children with disabilities, we are just as terrified as they are and struggle to find the right words to comfort and reassure them. The closer we get to the end of the school year, the more my son has been talking about it and expressing his fears. I am scared of what the future holds.

What I am trying to keep in mind is that this is part of our apraxia journey. It is the next road we have ahead of us, and we will tackle it just as we have all of the others. I tell you this so that you understand that the obstacles and the therapies will change, but your grit and determination will help pave the road for your child’s apraxia journey. Do not forget to LIVE life, try not to let it live you.

]]>abseve@bellsouth.net (Apraxia Momma Bear)Apraxia Momma Bear BlogMon, 30 Nov -0001 00:00:00 +0000The Struggle Within: Juggling Anxiety and Special Needs Parentinghttps://apraxiamommabear.com/blog/item/12-the-struggle-within-juggling-anxiety-and-special-needs-parenting
https://apraxiamommabear.com/blog/item/12-the-struggle-within-juggling-anxiety-and-special-needs-parenting I used to wonder which came first—my anxiety or the glaringly obvious fact that my son has special needs. After some reflection, it seems that…

In April of 2014, the diagnoses began coming in for my son. They were inevitable. He was just shy of 3 years old and basically nonverbal. He fell constantly and was always moving; he truly could not sit still. First came apraxia, then sensory processing, and then global apraxia. It blew my anxiety to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find the answer; I had to fix this. All three of these diagnoses are rare individually, so trying to find solid answers and professionals who could treat all three with the overlap proved to be extremely difficult and still is. I lived every day with a tightness in my chest, always exhausted, completely lost, and totally overwhelmed. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible.

After several months, I began to understand the terminology and thought I had gained some solid ground against my anxiety. Our son was making progress in intensive therapy, but with that came the overwhelming realization that we are in this for the long haul. None of these are disabilities that are easy to correct or that have a defined long-term prognosis. I needed to come to terms with the fact that we will have therapists more involved in our lives than most of our family and friends. Having a child with invisible disabilities while fighting an invisible internal battle with the outside world is exhausting. This was our new normal, even if I had no idea what to do with it.

As the anxiety within me grew, I struggled to control the constant barrage of “what ifs.” What if he doesn’t have friends? What if he never develops intelligible speech? What if he gets lost or hurt and can’t tell anyone? The list goes on and on. I began living at a 9.5 out of 10 on the “maxed-out” scale in life. The slightest thing could push me into full-blown panic mode. My hands frequently shook, my chest felt as if an elephant were standing on it, and my heart hurt for my child who I knew had a very long road ahead of him. I realized how desperately I needed a break, but I never felt allowed. It seemed selfish, as if I wouldn’t be focusing on what I should, and I was terrified at the idea of leaving him. How do you comfortably leave a nonverbal child? It became very difficult to know where one fear stopped and the next began. I lived in a constant state of “waiting for the other shoe to drop” and could feel the emotional spiral. I personally know many special needs parents who struggle with anxiety; many doctors now compare this type of anxiety to post-traumatic stress disorder due to its relentless and traumatic nature.

Since I have had to come to terms with the fact that I am not able to fix my son’s struggles, I work tirelessly to fix the world in which he lives. I became an apraxia walk coordinator, an advocate, and someone who provides all-around support for families such as mine. I find strength and peace in helping others, especially children, while building awareness. Coincidently, I have spoken with numerous other walk coordinators, advocates, and nonprofit founders who also struggle with anxiety in the exact same way. Working to make the journey a little easier for those coming up behind us seems to be therapeutic. I certainly do not feel as alone on this journey anymore. Turning my anxiety into action has allowed me to breathe a little easier and to feel as if I have a bit of control in my generally out-of-control world. Still, I must constantly remind myself that not only do I periodically need a break but I deserve a break. I must attempt to maintain balance in my life and keep my anxiety under control, not just for me but for my family as well.

Being a parent of an individual with special needs requires the absolute best of you every single day. It’s imperative for you to be in top shape both mentally and emotionally. I typically must be reminded of this—to go to yoga, go to a concert, read a book, take a minute for myself. It is hard but I am working on it, I am aware of it, and I hope to one day fully control it. Until then I must depend on those closest to me to support me and even push me to take time out and recharge.

If you are struggling, try building that support by having people in your life who truly understand what you are going through. I encourage you to find support groups on Facebook, to find parents “walking your walk.” That is where I find most of my comfort and no judgement. I suppose this will be as close to “fixing it” as I ever come, but I will never stop trying. As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies.

I have a secret … On the surface I am a wife, a mother of two, and a full-time professional in a fairly high-stress career.…

Oh, not the drug type. Don’t worry. I am a full-fledged live music junky. I. Cannot. Get. Enough. I know that most people go to concerts once or twice a year. Me, I anxiously await summer tour, fall tour, and festival season show announcements. I strategically plot how many shows I can get to while still maintaining my mom and work duties. It’s a balancing act with travel, tickets, flights, money, and how to not miss a “must-see” tour. Honestly, for me they all seem “must-see,” hence the addiction. I will follow the same few bands multiple times a year while adding in numerous other shows to fill in the gaps. I mustgo to shows; they remind me that I am alive. I get lost and “surrender to the flow,” as they say. I live for live music; it is the air I breathe. It gives me the strength and energy to return to my “real” life. If it sounds trivial and irresponsible to some, that’s okay. To those, I would say you don’t get it. For those that do get it, thank you! I feel your energy when you are there. You refill my cup and reignite my soul. I truly escape. I no longer think about therapists, the latest setback, the most recent ER trip, medical bills. I think about the jam, feel the beat, vibe with the crowd, and usually end up barefoot at some point.

For as long as I can remember, I have been called an “old soul” or told I was born in the wrong decade. I have spent countless years listening to bands that I am too young to have ever seen live, and I live by Grateful Dead mottos as if they are a foundation for my life. I get a rush out of chasing a Phish song, eagerly hoping each show will be the one I finally get it. Seventeen years and I am still chasing Waste! The thing that most people don’t understand is that I am just as excited for random people in the crowd when it’s obvious they have finally caught their song after a long chase. At JJ Grey & Mofro, I got lost in his passion; his voice sings to your soul. Being from the South, he can single-handedly remind me of the state in which I grew up and its dirty, funky roots that no one else in the United States sees. No matter the band or how far I may have traveled, when it comes to show day I instinctively drop my type A personality and embrace my free spirit. It happens so naturally. A friend recently told me, “I see your fire when you are at shows.” That was eye-opening. It reminded me that I must take care of myself, and to do that I need music. It is a wonderful moment when I turn from “Michelle-the-burnt-out-momma” into “Michelle-the-free-spirited-dancing-woman” without a care in the world. It is a true escape from reality with no barriers.

My mental health and overall happiness are dependent upon live music. Some people run, or paint, or play sports. That’s their release. I will spend days camping in a tent, eating out of a cooler, and bathing in a river to get my fix. You will never hear me complain about giving up my air conditioning and king-size bed for an air mattress and the Florida humidity. I am fortunate that my husband supports my habit even if he is one that doesn’t get it.

It is clear that we are raising a little “rager” as well. Apraxia prevents individuals from being able to speak and process correctly. Think of it as similar to a stroke; it has the same effect even though it is idiopathic. There are issues with delayed language development, difficulties with fine motor movement and coordination, and word confusion, among other challenges. Since my son, Ryder, wasn’t my first child, I knew there was a big issue long before the professionals did. However, before Ryder could speak he could hum … quite well actually. He is a mini-Deadhead and Phish fanatic. He will hum along and try to sing his favorite songs. Obviously, the Dead’s “I Know You Rider” is a staple, and he’s obsessed with Phish’s cover of “Roses Are Free.” It is therapeutic for the two of us on rough days to put on some great jams while we dance, hum, and sing. Ryder is aware of his struggles and works very hard to overcome them. Music, even at the age of 5, helps him release. Music is an amazing thing for those of us that feel it. I know Ryder feels it.

I am fairly certain that the moms in the carpool line, the CEO with whom I am working on the next deal, the family I am helping fight to get the best services possible for their child all have no idea about my secret … and that’s okay. Still, if you see me on the floor, come share a song and ride the wave with me. I couldn’t be the person that I am without the bands and the fans to energize my soul. To all of you, thank you.